LIFE IN THE MAZE

Image Source: http://www.gwydir.demon.co.uk

Being in a maze is chaotic.  There is sense of confusion in your surroundings, an urgent need to find your way, frustration at the pure craziness of it, and there never seems to be anyone else in the maze with you.

This is how having keratoconus (KC) feels to me.

I know that a picture says a thousand words—and there are many computer-generated photos of keratoconic vision around the web—but does that really describe the reality of having keratoconus in its entirety?  I don’t believe it does. Most people who don’t have keratoconus can understand what they see in a simulated photo full of ghosting or streaky, sparkly lights, but they can’t grasp a never-ending life of the distorted vision portrayed in a still photograph.

A keratoconic, blogger friend and I have been discussing all the oddities that go along with our vision lately.  We have different stages of KC and my vision has improved in many ways as a result of cross-linking (CXL), but I still have keratoconic vision even if my visual acuity is much better than hers.  We realized that keratoconus has never taken away our ability to see color, for example, although I have problems seeing clear objects and knock over water bottles at least twice daily.  Why are they always full when that happens?

We also compared notes on what visual acuity (VA) really means when you have keratoconus.  We decided it’s not the same as someone with simple myopia.  For me, the lowest lines I can read are so faded and full of ghosting, or multiple images, that I get the lowest line I can see based primarily on knowing which letters my ophthalmologist doesn’t use.  It also takes me about a minute to read that last line and I read the letters in no particular order.  Starting in the middle and working my way out seems to work best for me.  Go figure!

Then there is the big, scary world, which involves so many things the non-KC group takes for granted.  Let’s begin with attempting to drive a car.  This is akin to trying to navigate your way through a maze, but with massive anxiety.  My doctor’s assistant told me yet again that I can read 20/40 with each eye—very questionable, so I’m technically legal to drive my car.  With keratoconus, vision dramatically gets worse as the day goes on so most have trouble driving at night—the 1st symptom I noticed, but CXL stabilized my vision and I no longer have this problem.

My biggest issue with driving is due to post-CXL light sensitivity.  If I am forced to drive during the day, it will only be to the eye doctor since the clinic is less than a mile away. I see multiple images of everything: other cars, pedestrians, buildings, signs, stray dogs, big trucks and buses, panhandlers, broken palm fronds, and whatever else is within my sight.

Due to this, I drive when it’s pitch black, but only once a week or so.  There is literally less to see at night, so ghosting is less of an issue.  I can stay in my lane, but I do feel I’m very focused when I drive, as if I were contemplating some abstract concept involving something I don’t understand, like physics. Good thing for the tinted windows to hide the bizarre expression on my face.

The bulk of my night vision is more like the mild stage of keratoconus.  I can’t read street signs anymore, have trouble seeing where to turn to get into a parking lot, and the streetlights and headlights of oncoming cars are bothersome and have halos. They used to look like fireworks, so I try not to complain.  It is absolute madness, but I feel I can safely drive at night now as I averted getting sideswiped by a possible drunk driver a few weeks ago.  The Department of Motor Vehicles may dispute that, but I’m sticking by my story—and my 20/40 VA.

The most frustrating activity involves a store.  I refer to this as being utterly lost in the maze and going down every dead end in attempt to find the exit.  This would usually be the big-box stores that are so common in the US, especially in the wide-open SW, but even smaller stores pose a problem. The trick is to always go to the same store and memorize every aisle and exactly where every item you need is before losing any vision, but that isn’t always practical or convenient, especially when they decide to move things around in the store for no reason.

I will put this in perspective.  I had to go to a beauty supply—a smaller store by US standards—for more products to put in my increasingly unruly hair due to the post-CXL steroid drops.  I knew where the hair products were and I could easily identify what I needed by the shape and color of the container, since I can’t read the small print on most items. Maybe the price had doubled?  Well, that’s part of the fun, of course.  I also needed eyeliner.  Why would I need that when I can’t see well enough to apply it with any precision?  I really don’t know, but I could see just fine less than 2 years ago and know I look a hell of a lot better with makeup.  I might look like a clown now, but no one has stopped me and told me so.

In search of the aforementioned eyeliner, I missed the aisle and ended up in the lipstick section, which I could tell was lipstick from the shape of the tubes.  I headed to the next aisle and saw all the rows of colorful sticks.  Eyeliner! Luckily, the brands are written on big signs and since I can see color, I grabbed my golden olive and headed to the cashier.  6 months post-CXL, I can now read the debit machines for some reason and can see money, but that was impossible before.  I was about to start using singles to pay for everything like Ray Charles did to avoid getting scammed.

Another bizarre place is the center of the maze: sitting in a doctor’s waiting room.  I’m not having to navigate or search for anything—I just have to sit forever and do nothing.  I can’t read a magazine, after all.  Unless someone is quite close to me, I can’t see their face and it’s an odd feeling.  I don’t mean this in any offensive way, but everyone looks like the pre-surgery photos of the man who was the 1st face transplant patient.  Just skin over a skull, except I can see the hair and skin color.  Just Google it.

It’s in these waiting rooms—my home away from motel room—that the anxiety from driving dissipates, the frustration of trying to see through the distorted stores goes away, and I’m left all alone in a bubble of utter isolation.  I feel that no one can see me, since I can’t see them.  It’s as if I’m in my own world at these times—the crazy, maddening world of keratoconus that got dealt to me in that crappy game of poker.

By the way, how do you get out of this maze?

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29 thoughts on “LIFE IN THE MAZE

  1. What an interesting article. You know, just the other day, my eldest daughter was telling me she couldn’t drive at night – she is just learning how to drive. And when she said that, I blurted out “me too!!!”. But I can’t explain what it is. For me, it’s been going on for years – I would say 10 or more. I get very uncomfortable – this unsafe feeling – and I just CAN’T see where the streets go in! It’s an odd feeling and even with the nightlights, it’s darker than dark… and people seem to think I’m exaggerating.

  2. Thanks for sharing and dropping by! In all honesty, I trashed my 1st draft of this, which featured the typical image and my typical “kvetching” about my vision. Then, I thought outside of the box. How can I explain my vision or my EDS pain (etc.) to all who don’t get it? It’s no different than your night blindness; I’m sure you and your daughter can relate. I hoped someone would find this useful!

    I so enjoyed your blog. I was exploring away last night, even if I had to “zoom” the laptop way up… Lol! Your “voice” is so moving and your strength comes through it all. We all have our own writing style, no? I’ve been in your shoes and in your daughter’s–I still am! Playing patient and advocate I suppose. Before “the stars aligned” for me, I wanted to rob a bank and fly across the US to get to the Cleveland Clinic (wonderful diagnosticians), but my insurance wouldn’t cover it and how to travel alone w/my issues?? I know that there is a box your daughter’s symptoms fit in and it’s so frustrating fighting with doctors to help you get an answer (that you probably have figured out it seems).

    Curious if you could pay to go to Johns Hopkins in Baltimore–the best med. center for EDS in the US. There’s a famous doctor in private practice near there who is the EDS expert, apparently. I find that a cash payment for a specialist is between $500-$1,000 USD (+travel). I did that in L.A. once for the misdiagnosis. Ugh!

    Keep in touch!
    A

    • Thanks Alisa. You are a breath of fresh air. 🙂 You know, when I read this post I thought of changing my characters on my blog – for you and other people who deserve to see. My mom is legally blind from a stroke and she’s always struggling. I liked the theme when I chose it but I remember thinking the characters were way too small. I’m busy freelancing this week so not very active but will take care of the character thing ASAP. You shouldn’t have to struggle to read my blog.

      Linda 🙂

      • Hi Linda,

        I might still call you Sheep (Lil’ Sheep?). Oh, that’s so nice, but don’t worry… I just use my “zoomer” in Google Chrome and “D” helped me to blow up Windows so that helps out, too. I do notice some blogs are harder to see than others. My biggest problem is with messy blogs/layouts. Hate it! I go crazy when someone adds every gizmo to their blog and there’s no free space. Due to my distorted vision, I need everything to be clean and your blog is that way–really! I hinted at that to my brother when I reluctantly asked if he’d create this for me: “I need something people with KC can read,” but my brother and I tend to have the same need for visual order and I got this theme w/a custom header… Turned out fine (basic and not girly) and I write in one of the heading fonts.

        Glad I can be a breath of fresh air. No one ever says that one! I felt that way about finding you, too. I’d see you on D’s blog (that I love and hope she’s not sick of me yet) and say, “Who is this Sheep?” Lol. We’re all sitting in the same boat, so to speak–just wandering around at the mercy of these ridiculous medical systems watching the “normal” people live life. I hope we can all help each other out one way or another…

        Take care,
        A 🙂

      • “just wandering around at the mercy of these ridiculous medical systems watching the “normal” people live life”. I feel the same way – this is all so hard. Sometimes I honestly feel like I am drowning.

      • I hear you and feel the same. Drowning would be a good metaphor. It’s no life and you sit and wonder what the catalyst was that led you to this place. How did I get HERE? Doing it all alone is the worst, but it proves you’re a survivor. Due to this, I really can’t deal with people (in life or online) with the lovey-dovey families and/or spouses who always have someone to lean on (what’s that?). I’m sure you know the feeling. I think being emotionally abandoned as a kid (“crappy childhood” in my terms) was a blessing in disguise as it prepared me for this life. I’ve been in this fight for more than a decade and am still here. Sometimes I feel like I’ve been through a war if that makes sense? It’s like my blog’s title–you either play your hand or you fold. You’re still playing, even if it SUCKS!

        There was a comment on your blog that gave me pause… Can’t think what it was now, but it alluded to my issue with the insurance-based medical system in the US. I do know about Canada’s deplorable nationalized healthcare system. I’m originally from Seattle and went to Van. many times and knew many Canadians. However, I’ve spoken with Europeans and Australians about this subject and they have no complaints in regards to this. It’s so strange!

        Do you ever feel that if you could just move to another country that a huge burden would be lifted off your back? I do! I wish I were well enough to be an ex-pat again (I lived in Mexico 3 times)–I’d do it in a heartbeat for a functional, nationalized healthcare system.

        I’m heading back to your “house” this weekend to add my 2 cents–so drained from 4 days of Dr. appointments…

        A (so serious tonight from blowing $300+ on 3 meds at the damn pharmacy)

  3. Did you ever hear of Dr. Jaime Bravo – if I could, I would take my daughter to him…

    • No, but I just found him in Santiago, Chile. I speak Spanish (rather rusty now) so I could read the website. Great that he’s on the other end of the Americas!! Have you ever inquired if he does consultations by phone with records sent in advance? I always say, “If there’s a will, there’s a way.” Write a letter? Who knows… I find some flexibility with doctors who have a particular interest in a particular disease. My CXL surgeon/keratoconus specialist gave me a big discount when I flat out told him I wanted him, but couldn’t afford his fee and would have to go with Dr. X (who doesn’t know what he’s doing). My surgeon knew about this other doctor and didn’t want me to end up there, so he matched his fee, which was still through the roof. Shocked the hell out of me and I’d never met him–all through the phone. Maybe there is some hope w/Dr. Bravo. Good surname.

      I’ve heard of Dr. Francomano in Maryland, as everyone recommends her and she’d be closer for you.

      • We have EDS specialists in Halifax. My daughter is on a never ending waiting list. I may write Dr. Bravo as you say. Also, I’m thinking of launching “a real professional” foundation here in Canada. There isn’t any. As a medical writer, I could manage so much of the “educational” aspect of it… and mainly for physicians. I would hope to make a difference.

      • Oh, I forgot about the “waiting lists” in Canada–terrible! Btw, I was thinking you might be in Nova Scotia as you mentioned the Atlantic. I’ve never been, but went to Quebec and Ottawa yrs ago. I don’t have an EDS specialist here, just a PM&R who’s willing to take me on, but doesn’t treat the illness it its entirety. My diagnosis is new so my GP will have to deal with other aspects of it. I don’t like that.

        I do like your idea regarding the professional foundation. Anything is better than nothing! I saw a post in the reader a long time ago from a young woman in Alberta who wrote a letter to some higher-up in her province asking for more education on EDS for medical professionals, etc. The person wrote back and it was NOT a form letter. She posted the whole thing. This would NEVER happen in the US due to the insurance companies. One good thing about Canada…

        I say, “Go for it!” 🙂

      • We’re in New Brunswick. 🙂

      • Must be freezing, regardless! Brrrr… Well, the one good thing about Canada is you can see doctors outside of your city and it’s covered! Hate that waiting list system you’re stuck in…

      • Lol. Well I was born here and love the four seasons. Where are you at? And yes, it’s covered (sort of anyway). And guess what? I received a call this morning for an appointment in Halifax… in less than 3 weeks time!!!! It with an orthopedic surgeon…. hopefully we’ll have a diagnosis. 😀

      • Yay!! 🙂 So glad you get to see a specialist in Halifax. From everything you’ve written, it sure sounds like this is way more than EDS (or type III). I hope it’s like the swap meet story. So excited for you guys and sure hope you finally get an answer!

        I’m in the US desert (hate it, but need the dry air). Dust and tumbleweed. Cold or as hot as an oven. I sometimes call it the Wild West. It’s the crack of dawn here but I haven’t gone to sleep yet as I have some sort of vampire disease and if I can, I stay up all night and sleep during the day and feel better in the process. I don’t disclose my location due to the fact that Americans like to sue and I like to complain about the sub par doctors out here, not that I do that much anymore since I finally have a good team I think. Doctors tend to come and go around here, so it’s an ongoing process.

        Congrats again on getting to the next step… My fingers and toes are crossed!
        A

      • I’m always scared they’ll just send us back home with a “well, she just needs to move more”. I’m also crossing my fingers and toes.

      • Now you have blogger friends sending positive vibes, too! 🙂

  4. dyspatient says:

    There’s a surreal quality to this post. “Like” is the wrong word, but it is very compelling. I don’t know if I can fully imagine the experience of your vision, but I feel like I have a better sense of some of the ways it makes you feel. I hadn’t considered the supermarket. There should be a better way. We have the tech.

    • Thanks for your thoughts! Much appreciated as always. I scrapped my generic, 1st version of this post, which I mentioned to Sheep (who I’ve stolen, but we really just want to come back and play at your “house”). 🙂 I had to find a way to explain this–a way to make sense out of the abstract, as I live in Logical Land. I thought it would be helpful to anyone with a disease that is not obvious, like how to explain my EDS or your EDS, etc.

      You have been my greatest resource with technology (thanks!!), but there’s a point where nothing will help and you’re just “stuck in the maze.” Actually, having a PERSON with you would help, but that’s another story!

      This is a weird space I’m in: not legally blind (was) but not fully functional. The good news is that when my eyes have healed and IF they ever produce tears again, I can get special contacts for KC that recreate a normal cornea in essence and due to the new CXL surgery, my KC won’t progress any further. Yippee…

  5. 1hundredworks says:

    Hilarious! Much more funny to me, since I know what world you see daily. For the first 13 years of my life I did not know I had KC, so even though I had extremely crappy vision, I bicycled 15 kms to and from school everyday, played football, table tennis and did everything that some normal kid would.

    Once I put on the contacts, nothing changed! I have driven more than 50,000 kms on bikes and cars on dusty, wet, dangerous roads. Night driving is a big pain and I try to avoid it as much as possible, not just because of the halos from contacts, but the added halos from the goggles over the contacts plus the helmet visor over the goggles The fact that my KC has been there by birth and never changed even a bit seems to be advantageous now!

    It is fun too sometimes: Once me and my friend crossed a highway with heavy traffic on foot with no trouble at all, I just wore my black goggles, he held my hand and I put the other hand out like I couldn’t see anything, the traffic stopped like the earth caved in just in front of them! Good times.

    Keep up the spirit.

    Akhil.

    • Hey Akhil,

      I know! No one gets this but a keratoconic, so I tried to write it in a way that people might understand. Who knows? I am convinced being in the Western US is the worst!!! No transit systems and just HUGE stores everywhere. The only store I’m OK in is the little Indian market where I get my basmati, which really is a maze inside (looks like my image). Ha ha. You seem to have the opposite of me (I have late-onset KC that progressed like crazy in less than 2 yrs). I’ve never heard of anyone having KC at such a young age–maybe you’d be in the “weird group” like me if you saw my surgeon. I remember your post on Rae’s site now–the biker! Great you can do that. So funny about crossing the highway… Lol! Work it for all it’s worth I say…

      The one great thing about getting CXL (aside from not getting worse) is that I have the same vision all day long, so I drive at night due to light sensitivity post-op. The crazy, driving anxiety is either from needing to recover more or need for contacts–not the contacts again! It really is better than my pre-CXL night driving, which I had just stopped doing. I also got so much vision back, but that’s not normal. Food for thought if you’ve ever considered it. At least you don’t seem to have the progressing-type! Yippee…

      Thanks for dropping by…

      A

      • 1hundredworks says:

        I doubt that CXL will help me, I’ve seen it working on people whose KC kept getting worse. CXL just toughens up the cornes, from what I understand.

        In any case, I firmly believe in not fixing whats not broken. Things are going good and I intend to keep them that way, at least for the near future.

        Akhil.

      • Hey Akhil,

        I hear you. I think I’m so big on CXL because I got so much vision back and I had just gotten KC and was progressing like mad (CXL ages the cornea to “burn out” the KC, too). I think my corneas are in their 60s–should this be a worry???

        Your KC has definitely “burned out” by now and probably not worth the drama for getting stable vision 24/7. I guess you’d still be in contacts even if you got Intacs, so sort of a moot point in your case. As we say: “If it ain’t broke, don’t fix it.” I’m the same way. Reason I didn’t upgrade to Windows 8… (but it looks so cool w/those colorful boxes)! Ha ha.

        Glad all is going good,
        A

      • 1hundredworks says:

        Haha, I wouldn’t recommend windows 8, it took me a while to get past those colorful boxes and get some work done!

      • Imagine me with the KC and no contacts! I’m sticking with the mantra! LOL…

  6. Alicia says:

    Some days it just gets to me, I feel like a prisoner that lives with the shades drawn. Im really hating those new bright car headlights!!! Isnt shaving your legs fun now or trying to squint enough to see if you are using shampoo or conditioner 🙂 ahhhh

    • Hi Alicia,

      I hear you. It gets to me everyday because I really can’t wear lenses due to severely dry eyes. I have sclerals, but they make my eyes hurt so much more and I have to wear them on the couple of days I go out with ointment in my eyes (sort of defeats the purpose). I have major light sensitivity like you, but I was fine until I had CXL surgery, so mine isn’t from the KC and nighttime (post-CXL) is way better than daytime now.

      Hang in there. The genetic disease I have that caused the KC is w-a-y worse than the actual keratoconus, so I just think of it as the icing on the cake. It really does suck and I wouldn’t wish KC on anyone, though.

      A 🙂

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